Dr Lisa Curtice Director, Scottish Consortium for Learning Disability (SCLD)

 To assess quality of services through the perspectives of people who experience them  To make policies robust through research and evaluation  To ensure representation in consultations  To develop skills

an adaptation of good research practice

Information and consent  Accessible information in different formats  Time taken to check out consent

Relevant to person’s situation Flexible – follow stories if necessary Check out understanding Allow for wide range of verbal engagement

Identify communication needs first Consider role of proxy/supporter Allow for interruptions Give permission to stop Recording not a sufficient record

Framework analysis can be used to identify and reflect on themes Topic Theme a)Theme b) casesummary casesummary

 Clear agreement with interviewee ◦ Any limits to confidentiality ◦ Use of their information ◦ Form of reporting ◦ What feedback they will get  Storage of information ◦ Sample details locked and passworded ◦ Identifying information stored separately from interviews ◦ Limited access to data  Reporting ◦ Care with data linkage ◦ Attention to details that may identify

 Characteristics of people interviewed  Status of people interviewed  The setting

 access is challenging  background information and corroboration can be absent  balance between empowerment and support in the interview situation  need for particular care with disclosure and confidentiality

Conducted on behalf of Scottish Government

Methodology Inclusive Research Methodology Evidence Scoping Interviews with people with learning disabilities and family carers Consultation

People with learning disabilities Family carers  50 people in total  A range of ages  Men and women  Different living situations  A range of different needs  50 people in total  A range of different needs

18 in family home 22 living independently or with support 5 group home 4 forensic services Living situation – people with learning disabilities

Experiences can help identify what information and support is needed “ I’m trying to get out. I don’t know what to do..or somewhere that helps you with people with learning difficulties..no one has talked to me about it.”

 User and Carer Forum brings together people with a wide range of experiences ◦ They have developed resources such as “Supporting You to Support Us”  Tier 4 Services in Greater Glasgow and Clyde have a service redesign forum  A member of this forum sits on the national Modernising Learning Disability Nursing group

 Hearing other views  Working in a group  Staff may see people differently  Peer support  Growth in confidence – experience of having views heard  Opportunity to develop skills – getting views across in different ways  Views can make a difference if forum is respected by managers  May open other doors

and images from Talk for Scotland toolkit Consider joining the Scottish inclusive learning disability research network